Monday, 25 July 2016

Round 2 week 10 feeling HOT HOT HOT

For those 'of a certain age' (and UK based) you may remember a television advert many years ago of a lizard standing on hot sand picking his feet up repeatedly with the voiceover saying 'hot hot hot hot hot' that pretty much sums up this week.
In the UK it's been well over 30 degrees Celsius which is pretty much unheard of (cue a load of Brits moaning that 'we've had no summer' because this happened during the week rather than over the weekend LOL - we do love a good moan about the weather) Gareth and I went out and bought a portable air-con unit mid week because we were both struggling to sleep in the heat.
Apart from the heat and Gareth being a poorly boy - which I appear not to have picked up WOOHOO (crosses fingers, eyes, arms and legs, throws salt over my shoulder and crosses the path of a black cat for luck).
It's actually been a really uneventful week there isn't anything exciting to report apart from more of the tediously 'normality' of life.
Next weeks report (and the coming ones) will be far more interesting - I promise. We have our wedding anniversary on Saturday we will have been married 5 years and as a traditional present this year I 'Get Wood' - literally something made of wood not just a fun time on my wedding anniversary LOL.
We are also attending the wedding of one of my 'acquired' brothers on Saturday so their anniversary will be nice and easy to remember. We are booked into L'Ortolan on Thursday night for an early anniversary dinner for more yummy Michelin starred food.
Between now and then work will happen, I'll try to stay out of trouble, probably fail spectacularly at it.
Normal is lovely I highly recommend it.

Round 2 week 10 Blood results

A little later than planned this month, but here are this months scores. Despite Gareth (and Amber-Dog) being poorly last week I don't appear to have picked up whatever laid him low and my blood results are all trending as 'normal'
I've taken a screen shot showing the last 2 months of this year and last year so that they can be compared easily - plus the spreadsheet is now a bit of a monster so I will load up the file to both the Facebook groups so that people can download the full template.
Happy with the results the sharp increase in month one has evened out (a complete reverse of last year really)


  Lower Level Upper Level Pre-Lem BASELINE June July  June July
Blood              
Haemoglobin 120 160 144 146 143 137 138
WBC Count 4.0 11.0 11.9 8.8 8.8 6.4 7.6
Plt count  150 500 289 196 247 192 278
Rbc count  3.8 5.8 4.67 4.68 4.45 4.36 4.37
Haematocrit  0.36 0.47 0.445 0.444 0.422 0.423 0.426
MCV 76 103 95.3 94.9 95 97 97.5
MCH 27 32 30.7 31.3 32.1 31.4 31.7
MCHC 300 360 323 330 338 323 325
RDW 11 16 13 12.8 12.9 13.2 13.1
Hypochromic  RBC % 0 2.5 0 0 0 1.9 1.1
Neutrophils  1.8 8 8.09 8.1 7.3 5.7 6.23
Lymphocytes 1.3 4 2.5 0.09 0.35 0.19 0.3
Monocytes 0.2 0.8 0.83 0.44 0.79 0.45 0.68
Eosinophils 0 0.8 0.24 0.9 0.18 0.06 0.15
Basophils 0 0.3 0.12 0 0 0 0
Liver Function              
Bilirubin 0 21 9 4 5 9 8
ALT 0 60 21 19 19 22 23
Alkaline Phosphatase 46 116 51 54 50 48 49
Albumin 35 50 45 43 43 40 39
Thyroid Function              
TSH 0.35 4.5   1.84 2.52 2.59 1.61
Urea and Electrolytes              
Sodium 133 146 139 143 140 139 139
Potassium 3.5 5.3 4.7 4 4.3 4.3 4
Urea 2.5 7.8 3.8 3.9 6.3 3.3 4
Creatine 44 97 62 60 64 76 64
eGFR per 1.73sq m 60 99999 >90 >90 >90 89 >90

Monday, 18 July 2016

Week 9 post round 2 - Living with a germy plague monster

After last weeks excitement of being on the radio raising MS awareness and a relatively uneventful weekend. This week looks blissfully quiet (I hope) apart from work and the usual living stuff.


Gareth however has overdone things one too often I fear and rendered himself a toxic germy plague monster. He started coughing and feeling very queasy yesterday which we initially put down to a crashing hangover, but as the day wore on he didn't get better, he just felt worse and by late last night was in the bathroom with his head down the toilet and relegated to the spare room because he couldn't sleep.


This morning Gareth looked just as green as he did yesterday with the added breathing like an elderly asthmatic after a brisk walk (and he'd only rolled out of bed). He's dragged himself into work today as he has a new starter and a busy schedule but how long he's going to hang on in there before heading home and hitting the pillows again is an open question (personally I don't think he should have gone in at all).


EDIT at 12:35 : I just texted him - he's surrendered and gone home. I have sent Margaret our doggy day care lady a text warning her if the dogs don't come running to her when she arrives to exercise caution looking for them just in case she ends up traumatised by the sight of Gareth's hairy backside (or worse).


I had my usual oxygen treatment on Saturday and felt great after it, I'm hoping those super oxygenated red blood cells that are extra healing can fight off Gareth's germs.


MS-wise everything is still in place and holding, I'm struggling a little with the heat and humidity in the UK right now, but that might just be my 'Englishness' being in shock at the temperatures over here right now - after-all us Brits just aren't used to it on home soil so it's a bit of a shock to the system. I'm kind of loath to call it Uhthoff Syndrome right now because the weather is just so very unfamiliar to me that it might be the same as 'normal' people's reaction to heat they are unaccustomed to.


The dog bless them are being awesome, they now really look forward to their walk to the pub each evening after their dinner. They and we have made some new friends there and we feel more integrated to the area now.


Plus sad person that I am the pub is a couple of doors from the village church and it's a Pokémon Go Pokestop so I can refill my balls while we are down there. I'm sure that it's undignified (and just a little bit sad) to be enjoying the game (when it works) at the ripe old age of 44 (27 again) but I'm consoling myself that a friend of mine's Mum is playing it as well and she's a pensioner so I'm not the oldest big kid around.


Looks like the dogs and I will be going for a drink on our own tonight - I wonder how much trouble I can get up to unsupervised, how many Pokemon I can catch and if Gareth's off his food does that mean I can go grab a Kebab.

Tuesday, 12 July 2016

The BBCRadio Berkshire MS - The Interview

I'm reliably informed by the BBC that this can be listed to anywhere so here it is :


I didn't get a chance to say everything I wanted to say, but I think I didn't disgrace myself too much


http://www.bbc.co.uk/programmes/p03z7f6h

Blog on the BBC

GULP

I'm sitting here at Caversham House with a cup of coffee and waiting to be collected to go up to the studio for the 10am radio show.

There is only one way to describe this ..... I am absolutely bricking it.

I get a little window to raise awareness for MS, about the difficulties people suffer, the new treatments available and that being diagnosed in this current time with these treatments is whilst not a reason to sing and dance, but it's a time when we have effective tools to stop disease progression before disability happens. A chance to hope that like so many people who receive Lemtrada that we see improvements to our existing symptoms.

Monday, 11 July 2016

Round 2 Week 8 - Blog on the BBC this week

The last week has been a busy and productive week for me. Work has been exiting with new projects to sink my teeth into (not literally - they frown on us biting our colleagues)
We have continued to work on the dogs training and it is now paying dividends, we are so much happier and more confident with the dogs out and about. We had the trainer back again on Sunday for a 'trip to the pub' training session and it was fantastic with Winston and Amber responding so the techniques brilliantly. There was an incident with another dog and ours barking madly just as we were nearing home which will require another session in a few weeks time down in Dorset with the trainers 'pack' but we can see the light now at the end of the tunnel.
I had a message from the team who helped me publish year 1 in the 'reader friendly' Kindle eBook format, BBC Radio Berkshire had contacted them about the press release and want me to go into the studio to do an interview on air. They want me to talk about MS, Lemtrada as my treatment choice and why I started this blog and continue to update it, why it has been published as a book etc.
It's going to be a great opportunity to generate some really positive awareness that being diagnosed with MS in the current day and age whilst it might be  'life changing' doesn't have to be 'the end of the world as we know it'. I really want to emphasise that stopping the progression as early as possible is key in giving ourselves the best shot of not having that life changing relapse, 'The Big One' that's disabling and could signal the end of our ability to walk or see, our ability to work and run our homes, our ability to keep up with our families and enjoy life to it's fullest.
I'm so nervous, actually when I say nervous what I actually mean is I'm absolutely terrified. It's one thing to call into the radio occasionally with traffic reports and have them ask would you go on air for a moment with the presenter and give more detail. The anonymity of sitting in my car and just being Tracy rather than being 'really me' is safe but this is putting me out there with nothing to hide behind. What if people think I'm pushy and arrogant, deluded and unlikeable .... ARGH .... stoppit you stupid woman you'll make yourself more crazy than you clearly already are.
We had a fabulous dinner at the home of a colleague of mine on Friday night. Great company authentic home cooked Indian banquet food and as I selflessly volunteered to drive my poor husband got to have way too much of our host's generously poured drinks which rendered him pretty 'broken' on Saturday. LOL
I got my oxygen top up Saturday morning (while Gareth lay in bed feeling very sorry for himself) and met a future Speedway star who was there hoping that HBOT would help his broken arm heal more quickly (he was young and quite handsome - it certainly improved the view in the gas chamber - I'm clearly getting lecherous in my old age)
Andy Murray won Wimbledon, Lewis Hamilton won the British Grand Prix and Portugal won the Euros (I was torn on who to support in that one - I really had been hoping for a Wales v Iceland final which would have been a massive shake up for football)
MS wise everything is coming along nicely, after a couple of late nights Friday & Saturday I was pretty tired on Sunday and my legs went numb from mid thigh to mid shin on the walk back from the pub.  a couple of hours on the sofa snoozing through some food porn and everything was back to normal sensation.
I sat down last night and decided to read the Year 1 book. I wanted to go back and try to look at last year with a fresh perspective, I'm also hoping it will also help me with the interview tomorrow and jog my memory about things. It struck me that although I don't remember being tired a lot of the time last year I must have been because it's there in black and white, perhaps I'm a little guilty of glossing over the tired too much.
I can see how far I have come since then, I certainly manage the use of my energy much better these days. I can see the patterns which follow missing out on oxygen therapies because 'something came up' and when the tiredness happened. I still go every week, however these days I really make a concerted effort to get there and rearrange things if I need to rather than ducking 'just the one'. The 'tired' now doesn't happen as often as it used to, my energy levels are higher and I'm doing considerably more exercise than I've done in 5 years.
The book is here and the money is going to a great cause (not me) https://www.amazon.co.uk/dp/B01GE1V00M
Please leave some not too harsh feedback on Amazon as it helps people understand if it's been useful.


So if you want a giggle at me choking up in fear and sounding like a teenage boy going through puberty then listen in to the radio show at 10am UK time tomorrow on the 'Listen Live' link on their wed page.
http://www.bbc.co.uk/radioberkshire


If you're outside the UK you might need to use a proxy server to make it play (please don't ask me how to do this I have no idea - I'm just repeating something a technology person told me)
It will also be on the BBC iPlayer for download / listen again after the show has aired.


I really am bricking it at the thought of doing this

Tuesday, 5 July 2016

Round 2 week 7 YAY summer's back

Summer came back - kind of - we had a lovely weekend the sun was glorious and the dogs loved their time walking and playing ball in the long grass at the park (well they both looked very happy when they came out of the long grass as it completely covered them with only the occasional glimpse of a wagging tail poking up.
It was glorious on the way into work this morning but it seems to have 'deteriorated' somewhat as the day has worn on. It's grey and windy here in Newbury right now and it doesn't bode well for the dog walk down to the pub later on
It has been a nice lazy relaxing weekend of not doing much at all. I had my oxygen therapy on Saturday and the world remains a happy and energised place. I still go every week unless we are away doing something, I've said before the little voice in my head says ''but what would happen if you stop'. It's inconvenient because it messes up my Saturday plans but c'est la vie et la guerre so 11:15 until 13:45 each Saturday is booked for ever.
The lunchtime dog training on Sunday at the pub didn't happen as the trainer had forgotten to pop it in his diary, it's now rescheduled to next Sunday.
Football wise, I had to walk away from the Iceland v France game, My desire to support the underdog and team that put England out was mercilessly crushed by the time France put the 4th goal past Iceland - my dreams of an all underdog Wales v Iceland final will have to wait for another time.
Disappointingly I appear not to have won the Euro Millions again this week. I remain convinced that I am destined to win it simply because I'm the only person I know who's never won more than the basic minimum and even that very infrequently. I would prefer this happens sooner rather than later so I'm not old and infirm and smelling of pee and lavender by the time it happens.
I'm assuming that this 'Brexit' malarkey will not mean we are no longer allowed to play the Euro Millions as Camelot was the UK's brainchild even if it is now outsourced to Canada (although if it means that we can't play in the Euro's in future it might not be such a bad thing - less public humiliation) - clouds and silver linings and all that I guess.
MS wise it's all terribly uneventful I'm happy to report. a whole load of nothing happening here. All my improvements remain in place, all my symptoms remain blissfully absent.
It's starting to sink in now that this really isn't just a temporary thing it's a gift and that it's my responsibility now to take care of 'the machine' and keep it a healthy environment for my bone marrow to grown my new immune system into. I count myself as very lucky to have been diagnosed at a time when this was possible.